| Trustees' Annual | Report for theperiod | ||||||
| From | Period start date | To | Period end date | ||||
1 |
April | 2022 | 31 |
March | 2023 |
Section A Reference and administration details
Charity name CONGENITAL ADRENAL HYPERPLASIA SUPPORT GROUP
Other names charity is known by CAH SUPPORT GROUP & LIVING WITH CAH GROUP
Registered charity number (if any) 1178951 & SCO48814
Charity's principal address 27 FIRCROFT,
KINGSBURY, TAMWORTH STAFFS Postcode B78 2JU
Names of the charity trustees who manage the charity
| 1 2 3 4 |
Trustee name | Office (if any) | Dates acted if not for whole year |
Name of person (or body) entitled to appoint trustee (ifany) |
|---|---|---|---|---|
| Sue Elford | Chair | |||
| Sallyann Blackett | Treasurer | |||
| Jess Loveless | Secretary | |||
| Kaz Williams | Adult Coordinator | |||
Names of the trustees for the charity, if any, (for example, any custodian trustees)
Name Dates acted if not for whole year
Names and addresses of advisers
| Type of adviser | Name Address |
Name Address |
|---|---|---|
| Medical (children) | Prof Faisal Ahmed | C/O Glasgow Children’s Hospital |
| Medical (Adults) | Dr Helena Gleeson | C/O QE Hospital, Birmingham |
| Medical (Genetics) | Dr Trevor Cole | C/O Women’s Hospital, Birmingham |
| Medical (Surgery) | Mr Liam McCarthy | C/O Birmingham Children’s Hospital |
CAH Annual Report
Dec 2023
1
Section B Structure, governance and management
Description of the charity’s trusts
Type of governing document
- (eg. trust deed, constitution)
How the charity is constituted
The Congenital Adrenal Hyperplasia support group is covered by a constitution
We are a Charitable Incorporated Organisation
- (eg. trust, association, company)
Trustee selection methods
- (eg. appointed by, elected by)
Trustees are elected by the membership usually during an Annual General Meeting but there is also provision for a direct election by post or online. The constitution allows for current trustees to appoint directly for a period of under a year
Additional governance issues
You may choose to include additional information, where relevant, about:
-
policies and procedures adopted for the induction and training of trustees;
-
the charity’s organisational structure and any wider network with which the charity works;
-
relationship with any related parties;
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trustees’ consideration of major risks and the system and procedures to manage them.
The support group has developed policies to support the efficient operation of the group.
From an administration basis we have an expenses policy for trustee claims, a reserves policy to safeguard our funds and funding assessment criteria for interactions with research grant proposals. To safeguard those we interact with there is a safeguarding policy and a trustee code of conduct.
The current structure is based on a core team with the ability to request support from members where needed, such as logistics for local meetings. To keep operations effective and least cost we are using a cloud based online platform for file storage and communication.
- The charity interacts with other charities in a similar rare condition space on a goodwill basis without any formal interaction or legal commitment.
Risk assessment has been targeted towards financial requirements and public events such as the conference. We have ensured that our insurance covers these areas.
Section C Objectives and activities
The objects of the CIO are:
For public benefit,
to preserve and protect the health of patients with Congenital Adrenal Hyperplasia (CAH)
Summary of the objects of the charity set out in its by providing support and information to individuals with CAH, their governing document families and carers, raising awareness among the public and the medical profession and advancing care/treatment of CAH by funding research into CAH, the useful results of which will be disseminated for the public benefit.
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Summary of the main activities undertaken for the public benefit in relation to these objects (include within this section the statutory declaration that trustees have had regard to the guidance issued by the Charity Commission on public benefit)
The support group main activities are publication of information and support for those with CAH and their families. So that members of the public who may be suffering from Congenital Adrenal Hyperplasia or may have children/relatives/friends who may suffer from the condition, be made aware of Congenital Adrenal Hyperplasia Support Group and how it can help them we have a website that is publicly available. We also work closely with all endocrine centres who have information leaflets for the support group available. We regularly refresh these by mailshot. We also have stands at endocrine conferences so that we can raise awareness of the group and our services. One/more trustees attend events and conferences which are run by other organisations set-up with the purpose of bringing families where there is a child with CAH and adults with CAH together as well as those with other conditions which come under the DSD (differences of sexual development) definition, together. We extend our networks and highlight the work we do at these events as well as giving talks/ attending specialist medical events to raise awareness further of our organisation to pass the information to families/ adults they may be working with. The support group currently holds a bi-ennial formal conference. This is advertised widely through hospitals, medical professionals, our membership and the website. This is open access and we have medical professionals who kindly give up their time to support through talks and questions. We hold informal meetings in local areas once or twice a year that are also freely available, supported by one or two medical professionals and those with CAH or families managing the condition who can talk about their experiences. We also provide adult only meetings for those with CAH to speak more freely about how they manage their condition. This is facilitated by our adult support advisor. In all cases we advertise to our membership, through the medical centres and on our website. We also provide individual support through phone calls, emails and social media if needed and as appropriate.
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Additional details of objectives and activities
The support group has an assessment policy that Trustees can use to assess any grant requests. This is aimed at ensuring the use of funds is targeted at areas that support the in-year business plan and deliver maximum benefit to our members and those with CAH in general.
We do not have a current policy for investment, however policies are reviewed annually at the Trustee meeting following the AGM.
You may choose to include further statements, where relevant, about:
- policy on grant making;
Volunteers are very much at the heart of our operation, and the support group would not function without their help. Contributions for local meeting administration, newsletter articles and editing are all essential support. In essence the Trustees are also volunteers as there are no paid roles.
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policy programme related investment;
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contribution made by volunteers.
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Dec 2023
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Section D Achievements and performance
Summary of the main achievements of the charity during the year
As we had a conference last year, we are not due to have another until next year (although we have already started making plans for this). We did hold a small family meeting in Coventry this year though, which went very well and we plan to continue with these between conferences. I know Kaz has been liaising with our adult members and plans to continue holding online and face to face meetings with our older membership too, when possible. Committee meetings have remained online, due to convenience and are held at regular intervals. We all continue to be involved on various steering committees and advisory boards for both CAH and DSD and we are regularly consulted to comment on new research projects/papers/guidelines being written relating to the condition and also attend meetings regarding these too. We continue to be invited to attend official meetings run by the European Society for Endocrinology (ESPE), the Society for Endocrinology (SfE) and the British Society for Paediatric Endocrinology and Diabetes (BSPED) which we attend (either in person or online) when able. I attended the SfE clinical update meeting in April this year and the BSPED meeting in Manchester in November. Both were well worth attending, as they raise our profile amongst the medical profession and I met new specialists and learnt a lot about changes in practice too, which is important! I was delighted that patient support groups also got a special mention at the latter event as working well with the specialist teams and being a very important part of patient care (which resulted in a round of applause from all those present!) We continue to be very grateful for the support of our members, who through their membership fees, sponsored events and donations have kept our funds topped up, in order that we can help new families/those affected by CAH by providing an information pack at diagnosis (which is when support is vital) to help them understand the condition and realise they are not alone. These funds also mean we are able to continue with providing newsletters, developing our resources and funding meetings/conferences.
CAH Annual Report
Dec 2023
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Section E Financial review
Brief statement of the charity’s policy on reserves
The support group aims to hold a reserve of two years operational requirements. These funds are held in a cash interest account.
Details of any funds materially There are no funds in deficit. in deficit
Further financial review details (Optional information)
You may choose to include additional information, where relevant about:
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the charity’s principal sources of funds (including any fundraising);
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how expenditure has supported the key objectives of the charity;
-
Investment policy and objectives including any ethical investment policy adopted.
The support group finishes the year with an operating surplus of £5k for 2022/23. Our overall balance is held as £14k in the current account and £55k in the cash interest account.
The charities principle source of funding is from our membership. Income through the year has been £2.4k in membership fees, this is more than the previous year. Donations from member fundraising has been £4k, less than the previous financial year.
- No other income has come from local meeting payments or income from Gift Aid but we did have a small amount of interest payments and a grant from the Society of Endocrinology.
Expenditure was £3.5k over the financial year, lower than the previous year, despite running a full in person conference.
On a more detailed level, expenditure on administration was £1.1k, higher than the previous year due to more in person meetings.
Our key objectives are to provide resources and support for members and the public. This is evident in the larger expense items during the year.
Conference and local meetings £700 for the 2022 conference, newsletter and information packs £1.2k as part of the refresh of literature.
As has been the case for other years our expenses are concentrated on provision of information in person at meetings, online through our website or in print through the newsletters and information booklets.
During this year we have concentrated on maintaining income, minimising expenditure where sensible and ensuring the group has sufficient operating reserves. We are working on how we invest reserves while we are waiting to support medical research
CAH Annual Report
Dec 2023
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Section F Other optional information
The aims for the upcoming year include:
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Run another online meeting
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R un the 2024 conference
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L ook for a dditional committee members
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Support BSPED funded AI education research (ref Jarod Wong)
Section G Declaration
The trustees declare that they have approved the trustees’ report above.
Signed on behalf of the charity’s trustees
| Signature(s) Full name(s) Position (eg Secretary, Chair, etc) Date |
||
|---|---|---|
| Sue Elford | Jess Loveless | |
Chair |
Secretary | |
| 26/11/23 | ||
| 26/11/23 |
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CAH Support Group Accounts
| Receipts [In] Subscriptions Donations Conference Local Meetings Resources Grants Gift Aid Details 8 Details 9 Details 10 Savings Account Totals Payments [Out] Admin Meetings Conference Newsletter Information Packs Website AGM Insurance Audit Savings Account Totals Surplus or(deficit)for the year Balances brought forward Bank - 1 Bank - 2 Cash Balances in hand at Bank - 1 year-end Bank - 2 Cash |
1/4/22-31/3/23 This Year £2,390.50 £4,018.55 £542.00 £0.00 £0.00 £1,400.00 £488.94 £0.00 £0.00 £0.00 £113.31 £8,953.30 £1,157.61 £248.28 £554.21 £1,084.53 £154.06 £0.00 £0.00 £96.00 £250.00 £0.00 £0.00 £3,544.69 £5,408.61 £14,315.45 £54,791.02 £0.00 £69,106.47 £14,426.19 £59,904.33 £184.56 £74,515.08 |
1/4/21-31/3/22 Last Year £2,640.50 £12,198.77 £0.00 £0.00 £0.00 £0.00 £0.00 £0.00 £0.00 £0.00 £5.50 |
|---|---|---|
| £14,844.77 | ||
| £769.71 £349.74 £1,724.00 £715.66 £812.08 £364.76 £0.00 £96.00 £250.00 £0.00 £0.00 |
||
| £5,081.95 | ||
| **£9,762.82 ** | ||
| £4,469.75 £54,785.52 £0.00 |
||
| £59,255.27 | ||
| £14,320.45 £54,791.02 -£5.00 |
||
| £74,515.08 | £69,106.47 |